What
is your “mild” RA like? My anti-ccp was
3 and my RD said that was negative. How high does it have to be to be
positive? In fact, my RF was 32 when last checked, and the RD didn't seem
too impressed by that either since there was no visible inflammation when he
saw me (SED rate regressed from 30 for the general dr who saw the swelling in
both ankles and hand joints and gave me the dx with RA, back down to a SED of 5
for the RD). Still, I have almost continual dull achiness to some degree
in symmetrical joints of the hands, wrists, elbows, feet, ankles, and
knees. Then, there’s that generalized
indescribable feeling that something’s invading my body—I guess that’s what
they call “malaise”? It’s amazing, I
can take an hour nap in the afternoon and still go to bed by 8:30 or 9:00 and
sleep all night; so obviously, there’s some fatigue as well. Yet, my RD doesn’t want to put a name on it
except to say that it is “arthritis,” and that we will “wait and see” what
happens next. It is frustrating in the early
stage to get definite answers. How is it for you other early birds?
Hi lcarter, I was diagnosed in August. My RF back then was 16.5 and CCP 10. In last week's bloodtest, the RF went up to 18.5 and CCP stayed same at 10. My CRP went down to 5 from 26 and sed rate 36, down from 43. I haven't had anything near the pain I felt with the initial flair, nor do I feel stiffness in the morning (not yet, anyway). My left shoulder is achey and sometimes the left elbow bothers me. Every now and then I feel a twinge in my foot or wrist or knees, but it never developes into excruciating pain; it usually goes away. I feel just a tad more tired than I did before but I have been able to continue exercising and walking as before. I keep waiting for the other shoe to drop, and although my doctor has not yet prescribed RA medication, she feels I will need it sooner or later. I constantly search the internet for cases similar to mine in hopes of learning what I can expect and when (if?) the bomb will fall. My doctor feels that the RF together with CCP equals severe disease, even though my numbers are low, and even though RA is being kind to me so far. He found swelling in places I didn't even know were swollen - every joint in my hands and fingers, both elbows and both knees. Going by my body AND the fact I'm seropositive AND that by that point there was a lot of inflammation despite me being on 20mg of pred and a strong NSAID, he said there was 'absolutely no doubt' I had RA. My numbers have never really been outside 'normal'. Instead my GP's (I have 2 - one at home and one at uni) and my RD follow the trends within normal. The last 6 weeks I've been flaring and my ESR has been 11 everytime it's been taken. My GP was very surprised as it is such a changeable test. My CRP has been the highest it has ever been at 5. I'm proof that low numbers mean very little: My RA when it hit properly, hit hard and fast. In the last year (diagnosed Nov.06) it's made its way to my hands, wrists, elbows, hips, knees and feet. I have tendon involvement in both ankles due to inflammation, Raynaud's caued by RA and suspected Carpel Tunnel in both hands. We caught my RA early - I was diagnosed in under 4 weeks after presenting to my GP with hurty, slightly puffy hands and fatigue. I was put on MXT, building up to a dose of 20mg to try and control it, but I was allergic. Next was sulfasalazine 2g per day, which worked for about 2 weeks before I was back to square one again. I'm now on Arava and Plaquenil, which work! Kind of..... I have some nasty side-effects from the Arava and have become stuck at 6mg of pred, which shows it's not doing quite as much as it should be but as long as I'm at 7 mg of pred I feel like a new person! I guess you could say I'm early RA because my blood work is undifferentiated but the RD thought RA meds were appropriate wanted to hit it hard so it doesn't turn into full blown anything. I'm concerned that your RD isn't being more aggressive. Everything I read says the current thinking is to hit RA aggressively with combo drugs to try and nip it in the bud. Please get a second opinion. There may be a missed opportunity here to stop your RA in its tracks or at least slow it down significantly. Edited to add the answer as to what my mild RA is like: left sided aches, pain, (though not too bad), neuropathy, numbness, muscle weakness, muscle spasms and mild occasional joint pain. I am early RA - diagnosed 8 days ago. My CRP and ESR have been 'slightly' raised all year and I have had pain in almost every joint. Also puffy hands and ankles - but not overwhelming swelling. Also no RF or CCP at all!! Rheumatologist did bone scan and found increased uptake in hands & feet. This indicates bone inflammation. So far X-rays are clear - so thank goodness no damage yet. Started Methotrexate last week and took 2nd dose this morning. Feeling abit nauseaous. YUCK Is starting Mtx this early a bit of overkill? I know all the research says hit it early but I have no RF or CCP? just more and more pain in joints. Mich Thanks for welcome. How is antibiotic protocol going? I have only just started doing research on RA so still a definite newbie. What adds to the confusion is that RDs have so many opinions and prejudices of their own. I've seen that some people with the transient, here today-gone tomorrow-back again next week kind of pain are diagnosed with RA, while others, like me, have a doctor that thinks any pain that moves around is fibro. The only reason I'm on RA drugs is because some of the blood work indicated an AI disease as well. I guess the doctors can't be blamed because this disease is so different for everyone, with so many different symptoms. BTW, welcome to our newbies!
There are other people here who are only on AP that are doing well, and
a few that have tried in the past and didn't do as well. All RA
therapies (including mtx) have a certain amount of people it just
doesn't work for.
That said, I think it's well worth it to look into this therapy option.
A good book to read is The New Arthritis Breakthrough by Henry Scammell
and a good resouce web site is www.roadback.org.
i am glad to know that early RA is just as confusing for everyone else! i had a RF of 47, anti-ccp of 127, i also had elevated sed rate, ANA, crp. most were above the limits of normal but not extremely high. i dont think there is one test or one number that can be a blinking sign in the sky saying positive unfortunately. did he put you on meds? to me the way RA is different for every person is really frustrating. i have palindromic rheumatism. so i have fleeting transient pain that travels from joint to joint so its really hard to know what is going to hurt when, and that unpredictable pain makes it worse for me. my rheumy says testing pos for the anti-ccp predicts more aggressive and erosive RA so we are trying really hard to control my symptoms and progression now before i have permanent joint damage. i know how frustrating is can be in the early stages bc no one seems to want to give you a concrete diagnosis, however there is a silver lining. if you can get them to at least treat you and give you meds to help control the inflammation maybe you can stave off full blown RA for a while. trust me the early stages are frustrating and annoying, but hearing peoples stories here, the full blown RA is something i want to keep at bay for as long as possible. maybe they can call you early RA and treat you preventatively? (<-is that a word:)) anywho there is always second opinions...if you dont like the way your dr is handling your case switch. there is no sense battling a dr that you dont see eye to eye with! i had a long ordeal being in pain and trying to get a dr to be thorough enough to rule out other causes of my pain and finally peg a diagnosis of ra on me. i had more severe and cyclical patterns of pain rather than contant dull aching in the beginning maybe that is why i got a diagnosis faster, who knows. however i do know that going to a dr and saying hey this hurts, no i didnt injure myself and seeing their reaction is unique. i found drs like occams razor, the easiest answer is the best, however with autoimmune disorders that can be their downfall:( or ours...or both.
since i have early ra in understand your frustration, but try to stay positive nad stay in the best health you can for as long as you can!
I am still waiting for my appointment with rheumy. I am actually pretty confused with diagnosis process. If a young person has joint problem and even though all the blood tests are negative, why don't they diagnosed him as RA? What else could it be? If you injure yourself, you will have one joint hurt but the symptom of more body parts get involved should indicate it's not an injury. I just don't understand why they can't diagnose ppl easily.
I am thinking if the doctor can't make a dx initially, the reason they can't make must be there are other possiblities. So what are those possibilities? Also for ppl who go see a rheumy, how many of them eventually turn out not to be having auto-immune disease? If the ratio is zero, what are they waiting for? I might sound ignorant here but I am truly confused of this diagnosis process. I don't know what's wrong with my body and different parts just have mild dull pain at different times and it happened at different places every a couple of days. I guess i should feel grateful it never lasts. But this truly drove me nuts.
lcarter. my RA is very much like you describe yours to be. I was positive RF
when diagnosed but am now negative. My CRP is still very high as well as
my ESR. I also had the malaise as you describe but plaq has eliminated that
symptom as well as the fatigue. I think my diet and healthier lifestyle has
played an equal role as the meds have. I was diagnosed with mild to
moderate RA. I have no idea if I will always be mild or if this diseas can
progress to severe. So far so good for me. I hope you get on the right track
and things get better for you.
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